In it I aimed to clarify terms that are often used incorrectly or even casually by the public and the media. Numerous recent news stories–such as that of the passing of former Israeli Prime Minister Ariel Sharon–have invoked these clinical terms. Among the most gut-wrenching of these recent stories are the Marlise Muñoz case from Fort Worth, Texas, and the Jahi McMath case from Oakland, California. I have received a lot of feedback regarding my January 12th post, so I’d like to expand on this important subject further. In today’s post, I briefly review the background of these two cases and bring in the expertise of a world-renowned medical ethicist to weigh in on how brain death and our understanding of it may affect their courses and outcomes.

The Muñoz case involves a pregnant 33 year-old woman who collapsed following a blood clot in the lungs. Reportedly Muñoz is now brain-dead, though as of this writing I have been unable to find documentation of a physician or hospital spokesperson officially and publicly announcing that she has been declared brain-dead. The health status of the fetus is not clear. Muñoz’s husband, Erick, has requested that mechanical ventilation be terminated, in keeping with what he strongly believes her wishes would be (both he and his wife worked as paramedics, and he states that she had made her wishes very clear to him regarding what she would want in such a clinical setting). However, the hospital where Muñoz resides has declined to do so, citing a Texas law prohibiting the withholding of “life-sustaining treatment” from a pregnant woman. As I understand it, this Texas law is intended for pregnant women who are comatose, not brain-dead. Muñoz’s husband has now filed a lawsuit against the hospital. The central issues in this case are whether Muñoz is in fact brain-dead, and the degree to which a hospital may or may not have the right to operate against the wishes of the spouse given the pregnancy.

The McMath case involves a 13 year-old girl who underwent nasal and throat surgery–including a tonsillectomy–as surgical management for sleep apnea. She suffered cardiac arrest post-operatively, and according to hospital spokespeople she subsequently has been declared brain-dead–and therefore clinically dead–by several independently-evaluating physicians. As such, the hospital released Jahi’s body to the coroner, who then released the body to Jahi’s mother. At the center of this impassioned debate is the question of whether or not Jahi is dead. The McMath family’s attorney, Christopher Dolan, reportedly said in an interview that Jahi “has not passed. Her kidneys function, she regulates her temperature and her body moves now more than ever. This is a real human being, not a dead body.” Jahi’s uncle, Omari Sealey, reportedly has told interviewers that he hopes “to have her come back home with 100% full recovery.”

These are heartbreaking situations, clearly, with no simple answers or methods of resolution. So yesterday I spoke with my former teacher and mentor, Dr. James Bernat, professor of neurology and medicine and the Louis and Ruth Frank Professor of Neuroscience at Dartmouth’s Geisel School of Medicine in Lebanon, New Hampshire.

Dr. Bernat is a well-respected clinician with a scholarly interest in ethical and philosophical issues in neurology. He is extensively published in the discipline of medical ethics; his textbook, Ethical Issues in Neurology, is widely considered a seminal publication in the field. He has particular expertise in impaired consciousness, including brain death and the vegetative state, and has provided guidance, testimony, and consultation for many organizations regarding these topics over the years. On a more personal level, Jim is just a great guy, one of the most caring, compassionate instructors I’ve ever had. It’s an honor to call him my mentor and friend.

(Here’s a grainy old photo of us at an Academy meeting, back in the day.)

Dr. Bernat was kind enough to provide his thoughts and expertise regarding these two complex cases.

MC: Jim, do you get a sense that people in general have a firm understanding of what “brain death” really is and what it means?

JB: Most people do not understand the concept of brain death. They regard it as a metaphor for severe brain damage causing coma but fail to understand its totality and irreversibility, and particularly do not realize that it represents a medical and legal standard for death determination in the United States. The public press compounds the confusion when journalists who also do not understand the concept discuss “brain death” incorrectly and confuse it with coma and the vegetative state.

MC: As a neurologist, my concern is the confusion that may arise when the public hears in the media terms like “life-sustaining treatment” and “life support” when referring to a brain-dead patient receiving mechanical ventilation and medications. Could you speak to this concern, and are there better, more accurate terms you would suggest the media use?

JB: In the context of the brain-dead patient, the use of the term “life support” to refer to tracheal positive-pressure mechanical ventilation is seriously misleading and further confounds the question of whether such patients are alive or dead. The medical and legal standard of brain death means that the patient is dead so the ventilator or other treatments should not be referred to as means of “life support.” I prefer the term “physiological support” or simply that the dead patient’s respiration is being provided entirely by a machine which thereby permits their heartbeat and circulation to continue.

MC: Every American state has its laws defining death. As I understand it every American state defines death as either complete and irreversible cessation of cardiac and breathing functions or complete and irreversible cessation of brain and brainstem function. Therefore, state law defines brain death as equivalent to the actual death of an individual. What can be done and recommended in situations in which one’s individual opinions or religion differ from state law?

JB: Your understanding of state law is correct. Each country adopts a unique perspective to this problem. In the United States, where our traditions emphasize respect for religious beliefs, enforce the rights of the individual, and promote the value of a pluralistic society, we allow states to amend their death statutes or their department of health administrative regulations to provide a religious exemption to declaring brain death. Currently, New Jersey and New York have chosen this route. In these states, in the presence of a qualifying religious exception, physicians must use the circulatory-respiratory tests for death. Some scholars have advocated even more personal choice over the standards for death determination but I fear that this proposal would yield chaos in hospitals.

MC: The news reports pertaining to these two tragic cases often refer to state law and hospital policies. If you could communicate directly with state officials and physicians caring directly for these two individuals, what clarification would you ask for to assist in a better public understanding of their situations?

JB: Hospitals are constrained about how much specific patient medical data they release to the public by HIPAA regulations and by their internal risk management-legal advice. The dearth of specific information complicates the role of commentators because they lack a clear and complete understanding of the facts of the case. Additionally, when hospitals’ every decision or statement is exposed to public scrutiny by an interested press, it is understandable that they become cautious in their decisions and public statements. Despite these constraints, the public relations aspects of the cases require optimal management to provide sufficient facts and clarity for commentators and the public to understand the reason for their actions. These facts include the diagnosis, how the diagnosis was made, whether brain death was formally determined, and the reasons for the hospital’s actions in each case.

MC: What else can be done to ease the suffering of the families of these two unfortunate people?

JB: These are both tragic cases of young people who died from massive brain damage. As a parent, I cannot imagine the extent of suffering that these tragedies caused to their loving families. In addition to taking every measure to inform and comfort such families, I strongly recommend offering the opportunity for organ donation. Although some may criticize this approach as a predatory action, organ donation offers transcendent meaning to the families of brain dead patients. Numerous studies have demonstrated that families later emphasize how important and meaningful they found the donation process because it helped mitigate their suffering by creating good for the organ recipients from an otherwise senseless tragedy.

You may have noticed over the past week several major news stories of brain dead or comatose people, their loved ones, and their unfortunate circumstances. For many years neurologists have been concerned about the substantial confusion that exists regarding what is meant by certain terms that are utilized by the media pertaining to types of impaired consciousness. Brain death, coma, and vegetative state are in fact very specific terms in clinical medicine, and there are volumes of medical literature describing and discussing all of them. So today I will take off my sleep medicine hat, put on my neurology hat, and do my best to define these terms and distinguish them from each other for you, as briefly and succinctly as possible.

These 3 terms all refer to altered states of consciousness. They are distinctly different from conventional sleep, which is a normal, predictable, temporary, diurnal and readily reversible state of unconsciousness necessary in and common to virtually all animal species. All 3 of these states are generally bad–that is, with very few exceptions (such as drug-induced coma to prevent prolonged and life-threatening seizures, for example)–but neurologically speaking they are associated with varying levels of badness, not only in terms of unawareness of the patient’s environment but also in terms of prognosis for eventual “meaningful” neurologic recovery (i.e., return of consciousness with abilities to function independently, engage in basic activities of daily living, and enjoy the process of life).

Coma refers to deep sustained unconsciousness. The patient is alive, but there is no sign of conscious or behavioral movement, vocalization, or voluntary eye opening. The patient cannot be awakened; he or she does not respond to verbal commands or other conventional stimuli. However, physical examination may demonstrate basic neurologic reflexes and variable (usually primitive or abnormal) responses to painful (“noxious”) stimuli. There are a great many potential causes, including stroke, brain hemorrhage, severe closed head injury, medications, hypothermia, drug overdose, and prolonged deprivation of oxygen (such as from drowning or cardiac arrest). The chances of someone regaining consciousness and substantial neurologic function depend on a variety of factors, including the nature, duration and severity (and potential reversibility) of the underlying cause(s), the duration of the coma, and how severe the coma is based on a thorough physical neurologic examination conducted by physicians. In general, however, if the cause is severe and irreversible, and if the patient remains comatose for a long time (such as several weeks) following an injury, the likelihood of meaningful neurologic recovery is unfortunately small, even if he or she remains technically alive.

Vegetative state is a term is so deeply entrenched in the medical and popular literature that it is still utilized clinically. In this form of impaired consciousness, the patient episodically appears awake but does not demonstrate evidence of awareness of self or environment; some refer to this as a state of “wakeful unconsciousness.” The patient may appear awake upon casual observation, open and move the eyes, and exhibit sleep-wake cycles. However, voluntary movements or vocalizations and purposeful behavioral responses to conventional stimuli are not observed. It is usually associated with severe injury to the brain and it is prolonged in duration. Basic brainstem functions are preserved, allowing the patient the possibility of many years of life in this fashion. Unfortunately, this neurologic condition can be confusing (and often agonizingly so) for family members and clinicians, because signs on neurologic examination, the “depth” of neurologic impairment, causes and outcomes can all be so highly variable, and because the patient appears awake, though signs of awareness remain absent.

Brain death is the ultimate badness, referring to the complete and irreversible absence of all neurologic activity in the brain. Physical examination demonstrates an absolute lack of response to stimuli; there are no movements or reflexes. Diagnostic tests, such as electroencephalography (EEG), demonstrate an absence of brain and brainstem electrical activity. The patient does not breathe without the assistance of a mechanical ventilator; when the ventilator is stopped, there is sustained apnea. If other potentially reversible “mimics” of brain death (such as barbiturate intoxication and hypothermia) are ruled out, and if brain death is certain, there is no coming back from this; there is no chance of return of neurologic function or meaningful neurologic recovery. Though historically people have thought of death as the permanent cessation of heart function and breathing, many people and most clinicians consider brain death consistent with clinical death, even if mechanical ventilation can keep vital organs of a brain-dead person functioning for long periods of time. The Uniform Determination of Death Act (UDDA) is a draft state law approved for the United States in 1981 and has been adopted by most states. It defines death as “either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem,” the determination of which is made “in accordance with accepted medical standards.”

There are several important issues to bring up briefly here. First, it’s important to recognize that these terms may be confused with each other in the media, and sometimes even used interchangeably; be very careful of what you read and hear, and be prepared to challenge terms that are used. Second, the clinical condition and neurologic status of the comatose or vegetative patient can change and evolve over time, and sometimes highly improbable or unexpected outcomes have been reported to occur without explanation or warning, such as spontaneous neurologic improvement following sustained coma for example; as one of my mentors once told me during my residency, “patients don’t read the textbooks.” Finally, and importantly, there is an ongoing debate regarding the ethics of what these decreased levels of consciousness may mean for the patient, how loved ones should make decisions on behalf of the patient, and how society defines or views the concepts of death and a meaningful life over time. These are all obviously very complex issues, affected and influenced by individual, ethnic, generational, and religious differences. But we all–particularly those in the media–should at least strive to keep our terms and definitions as accurate and appropriately descriptive as possible, for the sake of ourselves and our loved ones.